PTSD - anyone had this diagnosis during or after cancer?
It's been a little over a year since my diagnosis, and I'm almost finished with reconstruction. I feel like I should be happy it's almost behind me, but instead I feel like I'm going crazy. I have terrible moods swings, mostly crying and often really intense anger. I find myself at work crying at at my desk one minute and completely losing my temper with people, especially when they're complaining about some stupid little problem they are having, after I've had toxic chemicals pumped into my body for five months, had my breasts cut off and now live in constant fear of recurrence, death and leaving my 2 little boys with no mom. I recently started seeing a psychiatrist and have meds for depression and anxiety. My psychiatrist said I may have Post Traumatic Stress Disorder, which she says happens to a lot of women after or during a life-threatening illness. This psychiatrist only treats cancer patients and is very knowledgeable. Has anyone else had PTSD with breast cancer and how did you handle it? And how long did it last? I feel like my job is at risk because of my mood swings. I'm really scared I'll never feel normal again.
Comments
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Hi,
My wife went through severe depression and PTSD during her treatment. She was on meds for that but they really did not seem to help. I used to take her out for walks and exercise and that too by "force". It was very hard on her. However, time healed everything. Give your self some time. Try doing things that you like the most. Everything will fall in place.
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Katie, I was tough during chemo, sick as a dog, but have always been the "suffer in silence" type.
I crashed & burned during radiation. My PCP put me on Zoloft & Antivan. She dx me with PTSD. I had been very ill 2 years before, spent 4 months bed ridden, had to have major surgery & remove 1/3 of my colon. Sorry, TMI ! That certainly was part of my distress, or had lowered my inner strength.
I had no clue when dx, how difficult it would be. Not sure many do. Having a lumpectomy was easy. Those of you that get reconstruction, much more difficult. It will be 2 years in July that I was dx & had surgery. I got on meds Jan. 2014. I have never felt depressed. Anxiety & distress was overwhelming. Life moves on, I am back to my active lifestyle, tennis, golf, hiking. I hate the Arimidex & living with knowledge that my risk of mets is high, but it is what it is. Time helps, sadly a lot of time.
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yes yes and yes! Perfect thread to start! I just finished chemo and am a mess! I still have rads and silicone exchange to go through. I'm angry, depressed, scared, resentful and a Hypochondriac now. I'm already on prozac but something is going to have to be changed! My fiancé told me He was not staying in living this way. That I need to figure out how to move on. Now I'm really angry with him too. Big hugs from this battle field
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Me! Me! It really took me by surprise. I had always been the strong one. I completely fell apart two months after dx and I floundered until later that summer - about 4 - 5 months. The inability to concentrate and the near constant panic attacks were the worst. To me it sounds like you are doing the best you can w meds and counseling. Now the only ingredient you need is time. There is no easy way through this. One day at a time. My PCP said to me "you're not always going to feel like this, I promise." My counselor said, "You know how long it'll take for you to feel better?" "As long as it takes." These are words I clung to
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Katiegrey, I live near you, so PM me if you wish to talk, but much to my surprise I suffered from a bout of agoraphobia during my treatment...I didn't feel safe except being at home. If I went into public, even with my DH I felt anxious, unwell, and vulnerable. I demanded we go home and only after getting inside my four walls would I calm down.
I believe this is a form of PTSD although not diagnosed by a professional.
From dx to treatment then to the present, a lot of very serious and traumatizing events occur, mostly against our will. It's no wonder we suffer mentally as well as physically.
Eventually you will "trust" your body again but this takes a long time. I'm not sure I'm there just yet, but when I'm in doubt I have to throw my trust to God. Saying a prayer, for me, is like taking an Ativan...it helps. I do hope you are able get through this soon, but know there are others here who get it.
Amy
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You know AmyQ now that you mention it I had that too. I'd be in a public place and I'd have to leave because I just could not handle it. The only safe place was sleep actually.
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I wasn't formally dx'd with PTSD, but I believe I have/had it. I am better than I was, but I still struggle with anxiety. This is all very "normal" for a very un-normal situation we are thrown into I think. I felt overwhelmed, scared, angry, depressed....out of control! Meds are important, prayer, and time. I still struggle with trusting my own feelings and body, every pain I wonder if I'm having a reoccurance or if I'm just completely overreacting.
U4aichic-I'm sorry our fiancé is being that way, but honestly if he is ready to bolt now it is for the best. This is part of the "in sickness and in health" of marriage. ((hugs))
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Thank you so much, everyone, for making me feel less crazy. Mean, I still feel crazy but at least I'm not alone. I've had bouts of depression/anxiety attacks during stressful situations in the past (divorce, mother diagnosed with dementia), and it can't possibly get worse than with cancer, right?
Rose50 - yes, I'm on Arimidex every day, plus I have to get an injection of Goserelin (Xoladex) every three months for the next two years to shut down my ovaries because even at 52,I'm still premenopausal. I had a feeling the massive messing with my hormones is causing really terrible mood swings. I've recently been suspended from work (with pay, thank goodness) for losing my temper and crying in front of people. My psychiatrist has to decide later this week when I should be able to return to work.
My oncologist's nurse also told me that for some women, the period after cancer is even harder on some women than going through treatment. I never expected to feel this bad.
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PTSD is very real and can be caused at any time of life for any traumatic experience. That is not to say that all will developed it but some do after a traumatic experience(s).
Hubby is PTSD - not from his USN 20 yrs but his childhood. His Mom died when he was 9 from Cervical Cancer and his Dad never explained anything at all to him - he found out from his school teacher at school that his Mom had died. He found his Dad dead of a heart attack when he was 16. Things that still haunt him today and how he reacts often.
I probably was PTSD also as child but was able to work through it myself once back in the States away from the experiences. Long story short - when 6, Daddy was stationed in France. On the way over something happened on the boat and I thought it was sinking (it wasn't just a child's mind when accident my trapped alone). This was in the early-mid 50's and there were quite a few happenings that were not nice at all to put it mildly. Ever been escorted home from school in a jeep with a machine gun mounted on it in a convoy lead by and followed by tanks to get all kids safely home - yeah fun. But once back Stateside I did work through it.
While PTSD is becoming more known and, to at least some degree, better understood - there is a long way to go but unfortunately not all Drs are well versed in the best TX plans individually. Just passing out more drugs is not always the best answer. Therapy (for some works better) than just drugs or in conjunction with drugs is good. The sooner to seek TX the better for getting it under control.
I see you are in MN - as we heading out of winter, did your Dr check your Vit. D levels? This far north, Vit. D is often very low and depression from SAD (Seasonal Affective Disorder) is a real possibility with it being low. Basically, an 'easy fix' - take supplemental Vit. D and use a light box. We lived close to the Canadian border in Puget Sound for 12 yrs and never had any issues with it there but started having issues with SAD the first winter we were here (Black Hills area, SD) and have to fight it yearly with increased Vit. D and my light box - it works. Low Vit D is associated with many issues among women. Just a thought to possibly check out if it hasn't been.
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Hi Kicks - I'm so sorry to hear about all of the tragedy you and your husband have had to endure, but am glad that you, at least, have been able to manage it. It is truly so disruptive to every aspect of my life. I wish I had started seeing a psychiatrist or therapist earlier in my cancer process, but it's so hard to find a good one. My psychiatrist only works with cancer patients and she's very smart and supportive, and non-judgmental considering I've been acting like such a lunatic sometimes. She has also referred me to a therapist that she highly recommends - I'm seeing her next week for the first time. Also found a breast cancer survivors support group that I LOVE because every single woman in the room totally understands everything I say. Nobody who hasn't been through cancer understands why I don't just "snap out of it." They think that because my hair is growing back, and I've returned to work, that I'm just fine. I'm so far from it and it just makes me so mad when they don't understand things like "chemo brain", PTSD and all of the visits to the doctor you still have.
I've been taking 4000 IUs of Vitamin D ever since I was diagnosed, at the recommendation of my oncologist. I also have one of those light boxes that I bought when I moved back to Minnesota 5 years ago, but probably don't use it as often as I should.You are right, though, about how the dreary winters here can affect your mood. We had one beautiful sunny weekend with temps in the 70s recently, and it felt like a huge weight had been lifted off my shoulders. Now it's dark and cold again.
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Others have said it all but yes, most definitely, and still have bad days 3 years on but in general its lots better than it was.........but then some days i just feel llike an alien in the world
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I'm so glad I came across this thread. I literally started feeling like I was going crazy. I felt so strong during treatments and thought that once everything was over my life would go back to normal again. Not so. I find myself thinking about cancer every day, I cry a lot, I'm angry and temperamental and my family are fed up. I hate going to appointments and build myself up to becoming a nervous wreck days before my appointments are scheduled and anything that is a memory of the time I was going through treatment I try to avoid such as places I visited, clothes I wore etc. I've always been a "never complain" type of person and my family were so proud of the way I carried such a positive attitude during treatment but I now feel like I'm falling apart mentally. I've definitely come to the conclusion that it finally might be time to seek some professional help. You are definitely not alone in this. The world of cancer really sucks but from what a friend of mine who is a 7 year breast cancer survivor told me yesterday, time is a great healer.
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Tania I don't think I could describe myself any better than you just did! Everything you said is exactly how I feel. I do hope time heals
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Hi all - yes everyone around me seem to think - she had her Mastectomy, has been back at work for 8 months (but terrible awful, icy, snowy, bitterly raw winter! - dark, cold days and difficult tedious call center job - not yet through 2nd part - the reconstruction and exchange - anyways the post diagnosis sadness, anxiety over it all - the day to day never the same,,, the constant worry looming above - what if I get METS to bones or brain or lung or what if get recurrence in side breast kept - it just hovers over me - i try to fight it - trying to meditate every morning - making time for ME to not rush and to begin each day calm, quiet and in tune with life - mindfulness, praying - thinking everything is going to all work out - be patient and hopeful, i ask God to allow me to be Humble, Hopeful, Healthy & Happy - so thankful for the blessings that mine could have been far worse, what is this diagnosis bringing about in my life, what are the hidden blessings that may be noticed due to this all - I am looking deep to learn from the experience and to grow - to be kinder, more respectful - slow things down, to listen and be observant of others - what you surround yourself by effects your mood and your energy - stear clear of chaos, if you seem to be safer at home now, maybe that is God saying you need rest and comfort and time to be quiet and tune into the universe to reprogram your new path,,, embrace this,, maybe listen to youtube yin yang yoga, or inspirational videos or read inspiring quotes,,, you most likely do have PTSD - I know I have it - - esp bad before I get Period - always been bad PMS but now even worse as am depressed and anxious and i know I feel I traumatized but I am slowly doing better - but very slowly - that's ok - i may try a Zoloft RX too - maybe time to try it again - i was going to try it and then changed my mind and heard good reports on Lexipro 10 mg and also on Effexor 75 mg and Cymbalta heard did great with BC women i met - everyone is different - sometimes have to try a few before find relief - - but the quiet time and the slowing down and meditating or just stretching and being calm help me,,, it's all overwhelming - all normal - lots emotions, and so much to handle - the appointments, paperwork, follow ups, thinking about cancer so much - of course not fun to think on - try to do things you like - distract yourself - that helps,,, and keep moving and keep on keepin on, time does do wonders,, Peace and hugs to you as you heal and renew..
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Here is what I posted in another forum:
I would like to let you know I am doing the exact same thing now. My last chemo was 7 days ago. In 7 days instead of resting I've had myself so worried about bone mets etc that I ended up puking in a dr. Parking lot, thought about committing myself to a hospital and many other things. My RO did the spinal xray to ease my mind but even now I'm freaking because I have such intense hip and back pain. I do take Neulasta. I went on a couple of threads that said "that's how their bone mets started" etc......my mental state is complete shit right now. My Onco told me that it is very unlikely during any chemo I would exacerbate any symptom as cancer. He also said that stage 2b it is less than 6%likely I would start out with mets. he also said that he truly believes most of my current side effects are from my chemo and that they will take a long time to go away, not just a few weeks. I did taxotere. Now for some reason I can't hear that and have become emotionally crippled with this. I finally emailed today and asked for sleeping Meds and a counselor who works with cancer patients. I feel like a failure asking for pain Meds because then I'm admitting something is wrong......but it is wrong, im in pain. Yes I've discussed this with him and yes he says we will watch it and investigate further if needed but he wants to wait at least until I'm 5weeks post last chemo. Now let me assure you every morning getting out of bed has become a challenge. Some days I just don't want to move. Depression has set in and I understand exactly where you are coming from. I am a shell of the person I was while the cancer was still on me. I don't even know what to do anymore. So I do what I can by reaching out to you all. It's all I have. I try to remind myself that 7 days after chemo I Am still having symptoms right? My eyes are twitching like crazy etc.......just wanted you to know you are not alone. I thought since this was a PTSD thread it might be appropriate to share what I'm going through here.
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Katie....did they do an estradiol test on you before the injections? I was diagnosed at 55, not in menopause either. Chemo threw me into it and after my mastectomy in 2/11, I never had another period. I took tamoxifen for just about three years. My onc ordered hormone bloodwork which showed I was in menopause so wen didnt do the shots unless my period wo would have come bCk.
I had pre stress syndrome, lol, really bad. Had to go on bp meds and an anti anxiety for awhile.
I still worry every day about every little thing, but I try to give it the two week rule. Funny, I went back on Cymbalta to help with the significant joint pain I was having after being switched to arimidex. So now, my joint pain is better and I figure the other part can't hirt, lol
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U4iachic - When you described yourself as "emotionally crippled" I really connected with that. It feels like a don't have a single normal mental moment anymore.
fluffqueen01 - I love your "two-week rule" suggestion - I might try that! If something I'm worried about doesn't go away or kill me in 2 weeks, I'll just forget about it! I initially took Aromasin for hormone therapy, but the bone pain in my legs was so bad that I had to wake myself up at 5 a.m. so I could take 2 percocet to be out of pain before I left for work. It was constant, and so painful that was was constantly in tears or on pain pills. My oncologist switched me to Arimidex (same type of drug, but different brand) and I had the bone and joint pain again, and was about to tell her I just couldn't take the drug anymore, but within about 2 weeks the pain subsided, and haven't had any bone or joint pain ever since. Still really hate those Zoladex shots, though - that needle is the size of a ball-point pen!
I saw my psychiatrist today and she gave me more meds for depression and anxiety (which I already knew I had) and said the psychiatrists used to diagnose PTSD primarily for combat veterans and women who had been raped, etc. But the most recent DSM (the diagnostic manual psychiatrists use) expanded PTSD to include anyone who has dealt with a life-threatening illness. After my treatment was over, I really thought I was going to be fine, but then a dear friend of mine in Brazil died of mets in November and I could literally feel myself unraveling. It left such a hole in my heart, and I got so angry with everyone, especially God (not sure what kind of believer I am, but when you're raised Catholic, it's hard to get rid of the concept of God).
My HR representative at work wrote a letter to my psychiatrist explaining why I was being suspended, and in it she said I got so mad at someone that I was overhead saying "he can fuck himself sideways with his own dick." WOW. I can't believe those words even came out of my mouth - I never talk like that! I was afraid my psychiatrist, who is a woman in her 60s, would be really offended when she read the letter, but instead she laughed out loud and said she admired my "creativity with words." It feels so good not to be judged!!
Thanks to all of you for your stories - it's so good to feel I'm not alone and crazy . Be well, all! Tomorrow's another day.
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I'm someone who had no psychological issues prior to diagnosis. After my first, main surgery, I was diagnosed as PTSD by a psychologist I found on my insurance company provider list. She treated me using a a form of psychotherapy called EMDR (click here). This worked very well for me, I no longer have PTSD and perhaps for some of you, this form of treatment might be the relief you are seeking. My best to all of you.
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LilacBlue - thank you so much for the information! I'm going to talk to my psychiatrists about it. I got my master's degree in psychology (back in the early 90s, but never went into the profession) and I vaguely remember one of my professors starting to study this approach. I'm so excited you shared this link and can't wait to reader....thank you again!
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Katiegrey I can't help but think that the anti-hormonal treatments also play a major role in our emotional health as well as PTSD. Before any of this I was a very placid and calm person, nothing ever really bothered me much. Since my diagnosis I've been anxious and sometimes depressed and since starting Tamoxifen I find everything bothers and annoys me, I now snap at the slightest of things. My husband the other day was whistling and it was starting to annoy me so I yelled out "will you shut the f&@$ up", I've never been one to swear. My daughter and I have always been very close and in the past week we've had the argument from hell which was brought about by my mood swings. My family are finding me a real pleasure to live with at the moment, not. The unfortunate thing is you don't seem to have any control over these emotions, it just happens. If I had my way I would love to go back to the person I was over 18 months ago.
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What a great thread to start, thank you!! I can relate in so many ways - the anxiety, depressed mood, and mood swings, it is quite the roller coaster! Right now is the lowest I have felt since Dx last fall, yet I have come so far - 12 rounds chemo, surgery and currently 2/4 AC completed. I agree that hormones play a roll, and feel as though it is a combination of everything that my body has been through.....I am exhausted emotionally/mentally.
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I am seeing a counselor who is an art therapist. It has been very helpful in being to get in touch with the anxiety, anger and depression about what has happened to my body and my life. It's been hard to get out of bed 3 weeks post final chemo. So glad to have the support!
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I'm super depressed. I had signed up for yoga this morning but didn't go because my self-esteem from lymphedema, my giant underarm scar (VLNT surgery), my hideous compression sleeve, my horrible looking hair, and my weight gain - put on 15 lbs recently due to more surgeries and recovery and lost all my muscle. This is the biggest clothing size I have been in 8 years only this time it's all flab. Staying in my bathrobe on the couch crying too fat for all my clothes and ashamed of lymphedema and my hideous hair. Drowning in debt from bills from my recent work leave and having to travel out of town for surgery. Packed up all my favorite cute clothes I can't wear and sent them to my sister. I don't know who I am anymore and am starting not to care at all.
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Maria, I wish I could give you a big hug and help your pain and anguish. I hope you have someone who you can talk to at home or to help you through this period. But you know you can always come here for support from your sisters.
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Thank you, Kat. Someone replying with some understanding and kindness goes a long way right now. I was able to share with my sister and let my boyfriend and some friends know today that I'm struggling. I'm going to go to yoga in the morning despite the terrible body shame I am feeling right now. Staying on th couch depressed and gaining more weight would be bad for my immunity.
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Yes, getting up and going to yoga would be the best thing for you. The endorphins from exercise will help, and you'll get outside your head which is important. I'm glad you have family to share with, and I hope they are supportive.
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Maria, my heart goes out to you. You know, this is what cancer does best. It takes us through the eye of the needle, to our core lowest physical point in life that we have ever been to and our minds (and emotions) say it's forever-and it does feel that way. You will come out of this-on the other side and a new physical you will be embraced and cherished. Don't let this effing cancer take all of you-kick-it back! You Maria are enough-right now and worth it. From what I've read, it takes awhile to get a handle on LE and you will do it. Talk to the LE women here - they are so knowledgeable and many have been able to get their LE to a dormant state most of the time. That box of cute clothes are waiting to be mailed back when ready. Keep talking to family and friends in f2f and here. Baby steps will do it. Like Kat, I'm here rooting for you.
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I finally made an appt to see a counselor. I took a little quiz on depression yesterday and "passed". I am at times short-tempered, sad, can't concentrate, blah, unmotivated, watch too much TV (unlike me). I am, in a word, weary. I am weary of having to think about every single action I take, make or do. Because I feel that every move I make will either protect me from recurrence or move me closer to recurrence. I'm sick and tired of being hypervigilant about it. I am very active, but take no joy in it, really--it's all about getting exercise and the right amount weekly so I can try to further prevent recurrence. If I have 3 glasses of wine on a Friday night with my husband while we unwind from the week and talk and laugh, I feel guilty afterwards, not happy that I can still do that with my spouse. Every time I read some kind of news about taking this supplement or that supplement to further prevent recurrence I jump on it and investigate.
I am on 37.5 mg of effexor for hot flash protection, but I find between that and the arimidex I am gaining weight getting plenty of exercise and eating about 1500 calories a day. And I have no libido. I am going to talk to a counselor and ask for Welbutrin. I'm sick of being ruled by my previous dx. Thanks for letting me vent. When I finally decided to go back to my counselor (who helped me with things previous to c) I got emotional I felt so relieved. I'm so sick of carrying this myself.
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I'm pretty sure I could've wrote that list Claire! I just started rads today and am trying to focus on one thing at a time, but my mental state is a complete disaster!
Ruth you are so correct about sticking to certain forums when diagnosed initially. I keep gravitating to the really bad stuff or depressing stuff. So I stick with just a few threads and keep reminding myself there are plenty of node positive women thriving!
Maria I'm so focused that it was in my nodes that's I've already envisioned my funeral, my daughters life, etc......I had to just calm down. I have a clean pelvic ultrasound, bone scan and spine xray. That's more than most stage 2 women get. I hate mornings they are very difficult for me to get up. I have so many bills now I don't know what to do. My hips are hurting so exercise is like torture right now. Hugs to you
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U4iachic - There are a LOT of women here who had positive nodes (me - 19/19). Also Stage IIIc. Also IBC. Aug will be 6 yrs since DX and I'm still 'here', loving life, doing any and everything I want to and still NED. (I also happen to be 68 but can 'out do' a lot that are a lot younger. )
Stay away from the negative - it does you (or anyone else) no good.
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